Care4Conway: Yuck again!

Wednesday, February 4, 2009

Yuck again!

You guessed right. Connie is vomiting again. Tonight at dinner he turned his head when I offered him a bite. He drank 1/2 a cup of soda (not an everyday occurrence but Grandpa said he barely had any wet diaper today and I didn't want him to get dehydrated. I knew he'd drink soda at least so I gave him some in his cup). He commenced to throw up at the dinner table. He played and acted fine. He ate a nutri-grain bar and drank milk and kept it down for over three hours and then all of a sudden, a little cough and some crying and up it all came. He's been getting his antacid so I'm not sure what's going on. Speaking of antacid, I got a letter from Cigna (the world's tightest insurance company) today saying that they will not approve a refill on the prevacid the way it is written. Someone who works there apparently knows how to treat Connie better than his own pediatrician so they've decided he should be taking twice as big of a dose once per day rather than 1/2 the dose 2X per day because it is cheaper that way. Ugh. Not looking forward to dealing with that issue. Please pray that he stops vomiting.

While we're asking for prayer requests, please keep Mary Kathleen in your prayers on Thursday, tomorrow, for her surgery to remove her congenital nevus birthmark from the back of her head. We head down to Children's around 7:45. She's scheduled to be taken in sometime around 10:00-10:30. That's if they proceed. Generally they don't like to put kids under who have any symptoms of a cold/cough. She has been coughing some and has a runny nose on and off. We're not sure if she's actually sick or if it is allergies, especially with the hives she had all last week. They said they will make the call tomorrow and listen to her lungs and check her out thoroughly before proceeding with the surgery. I don't want it postponed after taking the day off and arranging a sub, but I don't want her risks of complications increasing due to an illness when the procedure could be rescheduled. We'll update when possible.

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Conway's Heart Story

Conway's Heart Story

Conway David Beckemeier was born on March 3, 2007. His heart defects went undetected during pregnancy and he was diagnosed at two days of age with L-TGA, a large VSD, sub pulmonic stenosis and Ebstein’s Anomaly. Just before turning six months of age, he underwent open heart surgery to reroute the bloodflow in his heart. Called the "double switch", this procedure is the most technically challenging for pediatric cardio-thoracic surgeons to perform. The version of the double switch that Conway received on 8/28/07 was called the Rastelli-Senning with VSD closure and sub pulmonic resection. He suffered a grand mal seizure following the surgery that lasted over an hour and had several other post-op setbacks including surgical heart block, which required another operation on 9/18/07 to insert a pacemaker. Following surgery and such a long hospital stay, Conway developed an oral aversion (he would not eat) and he was 100% NG tube fed for eight months. He also lost muscle tone and required both physical and occupational therapies. In April 2008, he had a cardiac cath and attempted balloon angioplasty on his pulmonary arteries that did not work. Although his recovery was very long, he had a solid year or so of being a "normal" kid . Then in May of 2009, it was discovered that Conway was having rhythm disturbances, specifically atrial flutter. His pacemaker allowed it to go undetected for several weeks until he showed signs of heart failure and was admitted to the ICU for a week to be placed on IV heart meds and undergo cardioversion on 5/6/09. He went home and his heart function started recovering when he had another episode of flutter (6/16/09). This time, he was again hospitalized and put on IV milrinone, but he converted back to normal sinus rhythm by himself. At that time he was placed on the anti-arrhythmia drug, amiodarone. On 7/22/09 he had to be cardioverted again for yet another episode of flutter. The following week, he got worse instead of better. His cardiologist did a full work up and it was determined that his aortic, mitral and tricuspid valves were all leaking worse and were felt to be the cause of his heart failure. On 8/24/09 he had a cardiac cath and attempted ablation. The electrophysiologist was unable to induce a single arrhythmia. Then, just two days later, he went into atrial flutter on his own. He was placed back in the cath lab where he underwent mapping and a total of 17 burns were made to try to knock out his arrhythmias for good. The next day, 8/27/09, he had his second open heart surgery to repair his mitral valve called ring annuloplasty. He also had a partial Maze procedure done. His surgeries are performed at C.S. Mott Children’s Hospital at the University of Michigan (Ann Arbor). This time he was discharged just six days later! His Left Ventricular function improved drastically. In December 2010 we noticed he began getting more winded during physical activity. A January 2011 cath showed that he is outgrowing his RV-PA gortex conduit, but he was not symptomatic enough to warrant intervention. In April 2012 Conway’s fatigue increased and an echo at the end of May revealed that the ratio between the right and left sided pressures has gotten too high and it is time to replace the homograft that was placed when he was five months old. He had a cardiac cath on 5/25/12 which confirmed the echo findings. He had surgery on 8/8/12 to replace his pulmonary valve and RV-PA conduit, add an additional pacing wire to his left ventricle, and change his generator to a bi-ventricular model which is shown to preserve function and help the heart muscle pump more efficiently/effectively.